CMV Association

CMV Association Our purpose is to minimise the impact of CMV on all people in Australia & Aotearoa New Zealand

17/09/2026

YOUR EXPERIENCE MATTERS

Your personal experience can help demonstrate why better CMV education, prevention, testing & care pathways are needed.

Every contribution will help make CMV more visible.

It doesn't need to be long or perfectly written.

You may wish to write about:
- Whether you received accurate & timely information about CMV.
- How CMV was, or was not, discussed during antenatal care.
- Your experiences with testing, diagnosis & referrals.
- The emotional, physical & financial impact on your family.
- Access to appropriate specialist care & postpartum support.
- What you feel healthcare professionals should be know & be taught about CMV.
- Changes you believe are needed to improve care for future families.

If you are comfortable to do so, please share to encourage others to have their say.

To make your submission go to:
https://www.aph.gov.au/.../Committees/Senate/Womens_Health

Submissions close on 9th October 2026

CMV Association đź’ś

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.As CMV Awareness Month c...
30/06/2026

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.

As CMV Awareness Month comes to a close, we are honoured to share Orley’s story.

Orley is 14 months old. He was diagnosed with congenital CMV after calcifications were found on both sides of his brain during pregnancy.

He lives with cerebral palsy, profound hearing loss in his right ear, and epilepsy caused by abnormal brain waves.

He is deeply loved, fiercely celebrated, and, in his mum’s words, her little warrior.

Thank you to Nikkehlia for sharing Orley’s story with us. 💜

We are so grateful to every family who has trusted us with their CMV Warrior this month. June may be ending, but we will continue sharing stories, raising awareness and making CMV matter beyond Awareness Month.

Swipe to read Orley’s story.

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.Today, we are honoured t...
29/06/2026

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.

Today, we are honoured to share Azalea’s story.

Azalea is 2 years old and thriving. After failing her newborn hearing test, further investigations revealed she was profoundly deaf in her right ear due to congenital CMV.

She now has a cochlear implant, is developing her communication skills and continues to amaze the world with her resilience, energy and joy.

Azalea’s story is a reminder that families deserve to hear about CMV before diagnosis.

Thank you to Taleaha for sharing Azalea’s story. 💜

Swipe to read more.

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.Today, we are honoured t...
28/06/2026

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.

Today, we are honoured to share Teddy’s story.

Teddy is 2 years old. His scans during pregnancy were normal, and his mum had never heard of CMV before his diagnosis.

After Teddy failed his newborn hearing test, further investigations eventually led to CMV testing. Teddy is profoundly deaf in his right ear, has left hemiplegic cerebral palsy, and now has a cochlear implant to help ensure he can access sound if his hearing changes.

But Teddy is also happy, bright and full of personality. He loves to use Auslan, knows his ABCs, colours and shapes and his family are so proud of everything he has accomplished.

Teddy’s story is a reminder that awareness and testing matter.

Thank you to Amy for sharing Teddy’s story. 💜

Swipe to read more.

Behind every CMV statistic is a real baby, a real family and a story that deserves to be heard. Tonight, we are honoured...
26/06/2026

Behind every CMV statistic is a real baby, a real family and a story that deserves to be heard. Tonight, we are honoured to share Christopher's story.

Last night, Christopher Phillip passed away peacefully at 9:24pm, surrounded by the love of his family. Pam and Tom have shown extraordinary courage in sharing his journey for the past 12 years - a journey marked by devotion, advocacy, and a love so deep it changed the world around him. Their strength in preparing their other three children for this moment, and their gratitude for the community that has supported them, speaks to the heart of who they are as a family.

Christopher is deeply loved. His life mattered. His story has already helped countless families, and it will continue to do so.

Thank you Pam and Tom, for sharing Christopher's life so generously, with such courage and love. We honour Christopher today and always. RIP 💜❤️💔🪽

Behind every CMV statistic is a real baby, a real family and a story that deserves to be heard.Today, we are honoured to...
25/06/2026

Behind every CMV statistic is a real baby, a real family and a story that deserves to be heard.

Today, we are honoured to share Wyatt’s story.

Wyatt was deeply loved and very much wanted. After a textbook start to pregnancy, concerns were picked up at a 19-week scan, leading to further investigations and the devastating news that Wyatt had congenital CMV.

His family were told the virus had caused significant complications, including severe brain damage. Faced with the most heartbreaking decision any parent could imagine, Wyatt’s family said goodbye to their precious baby boy.

Wyatt was born on 10 November 2017 silent but perfect. He is forever loved and never forgotten.

Thank you to Katlyn for sharing Wyatt’s story with such courage and love. We honour Wyatt today and always. 💜

Swipe to read his story.

24/06/2026

We have loved sharing your CMV Warriors with our community throughout CMV Awareness Month.

Behind every story is a child, a family, and a reminder of why awareness matters.

We have been so moved by the number of families who have shared their stories with us. Because we have received more stories than we can share during June, we will continue profiling CMV Warriors regularly beyond CMV Awareness Month.

If you would like to share your child’s story, please continue to send it through via email or DM. We would be honoured to keep sharing these stories weekly and help more families feel seen, supported and less alone.

Thank you to every family who has trusted us with their CMV Warrior. đź’ś

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.Today, we are honoured t...
24/06/2026

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.

Today, we are honoured to share Aemilius’ story.

Aemilius is 4 years old. While he is not affected by congenital CMV in some of the ways people may expect, he still lives with the impact of the virus.

He is deeply adored by everyone who meets him. He loves travelling on planes and is completely obsessed with Woody from Toy Story.

Aemilius’ mum had never heard of CMV until he was diagnosed in the NICU at four weeks old.

His story is a reminder that CMV can affect children in many different ways and that families deserve to hear about it earlier.

Thank you to Alexis for sharing Aemilius’ story. 💜

Swipe to read more.

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.Today, we are honoured t...
23/06/2026

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.

Today, we are honoured to share Remi’s story.

Remi’s mum had a smooth pregnancy and straightforward birth. It was only after Remi was born, when doctors noticed low blood sugar, a petechiae rash and abnormal blood results that testing revealed he had congenital CMV.

An MRI later showed significant changes to Remi’s brain caused by the virus and his family were told he may face lifelong challenges.

Now 18 months old, Remi is happy, determined and deeply loved. He has cerebral palsy and mild hearing loss, wears AFO supports, is learning to crawl, and is preparing for a walker.

He is a light in the lives of everyone who loves him and his family are beyond proud of the little boy he is.

Thank you to Remi’s family for sharing his story. 💜

Swipe to read more.

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.Today, we are honoured t...
22/06/2026

Behind every CMV statistic is a real child, a real family and a story that deserves to be heard.

Today, we are honoured to share Courtney’s story.

Courtney's life was profoundly affected by congenital CMV. But through it all, Courtney’s smile and laughter carried her family.

Courtney gave her family six precious years before she passed away peacefully in her sleep.

Her family had never been told about CMV during prenatal care. It was only through their own research that Courtney was eventually tested for the virus.

By sharing Courtney’s story, her family hopes to put a face to this often-overlooked virus and help more people understand the devastating impact congenital CMV can have on children and families.

Thank you to Courtney’s family for sharing her story with us.

For Courtney. Always đź’ś

Swipe to read her story.

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